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Pull up a chair, grab a cup of coffee and have a nice long chat. This forum is the perfect place to get to know one another on a more personal basis. Share birthday or get well wishes, funny stories, jokes and interesting tidbits.

Does anyone know any facilities that would want my $&%^&)@-up body for research for syringomyelia? I am redoing my will and want to specify, so doing some research. If possible, I would like organs that are good to go to those who need it and then my lovely spinal column to go to a place that may want to check it out.

BrownEyes...awesome idea.I think it's Duke University also has a lot of long term genetic studies going on chiari and syringomyelia. You might contact them?Rozanne/phyre

"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman

Be sure to check with the intended institution and jump through the needed registration requirements. I found out when my parents died that many institutions are no longer quite so willing to accept donated tissue for research. Many of them want you to join their studies while you are alive, have limited study availability, and/or limit their studies to in-state residents.

In my father's case, he had been a brilliant nuclear physicist, and his doctors mis-diagnosed cardiac-related brain damage & Parkinson's dementia as Alzheimer's... yet he devoured a book about human rights abuses in Darfur and the Eastern Congo just two weeks before his death! With my parents' cases, the Harvard brain bank was no longer accepting unless you had a healthy (dementia-free) brain when you registered, and they required that you pay for your own autopsy! In the case of Duke, they would only accept pre-registered in-state candidates.

I think what you are doing is excellent, and I hope the hurdles aren't too significant for you. Please keep us posted about what you find out!

Karen

P.S. If and when you get to the point of pre-planning final arrangement, it would be a good idea to include this information in your packet. It might also be a good idea to include it in your living will/advanced directive.